Samuel Johnson opens up about his struggle following sister Connie's death

Samuel Johnson is a man on a mission. The actor and 'cancer vanquisher' is solely focused on ridding the world of the disease that claimed the life of his sister, Connie, 40, in September 2017.

Following her tragic death, the beloved Gold Logie-winning actor promptly returned to work at their Love Your Sister charity, but he tells 9Honey he’s struggled to continue without her.

"My head just hasn't been in the game," the 40-year-old said of the past eight months. "There was a bunch of stuff that she left me with that I had to make sense of. Now that I don't have her to help guide this, I had to do all my homework and I had to make sure that we get this right for her.

He described Connie as "the brains of the operation", with his role as being "just the muscle."

"I was the guy that pedalled," he said, referencing one of his first fundraising efforts in 2014 that saw him travel via unicycle around the country.

"And it's a very complex problem that we're trying to solve. And I wanted to get it right. It took me eight months to find a way forward and I'm confident that I'm doing what's best for her and for every other family that feels the same pain."

Before her death, Connie became the face of cancer in Australia -- bravely sharing her battle against the cruel disease until the bitter end, always with a smile on her face and loved ones around her -- including her sons Willoughby, 11, and Hamilton, 10, whom Johnson says are "thriving" despite the devastating loss of their mother.

"The kids have finally got a childhood to enjoy," the actor said. "They never knew what it was like to just be a kid because their mum was sick since they could remember. The pain of her being gone is there, but the pain of watching her so sick is gone too.

"Connie's husband [Mike] is doing the boys proud as she knew he would and the family has bounced back a treat."

Connie had spent most of her life fighting off the disease in various forms -- firstly as a child when she was 11 and diagnosed with bone cancer. A decade later, at the age of 22, she was diagnosed with uterine cancer.

Then finally, at age 33, the cancer returned in the form of breast and liver cancer and ultimately claimed her life.

The legacy she left behind, in the hands of her devoted brother, is extraordinary -- as is the next phase of Love Your Sister, the cancer charity the siblings founded six years ago.

"We started off as a breast cancer mob and we still support the Connie Johnson Breast Cancer Lab. But so too do we support the establishment of a new national tissue bank for all cancers," Johnson explained.

"We're being very strategic about how we spend the donor dollars and we sanctify them. We don't touch them and we never have."

He explained that most charities fund their operational costs from donations before the remainder is used for the intended cause. Johnson, however, funds the operational costs at Love Your Sister separately, to ensure every dollar donated goes towards treating and curing cancer.

"I've never spent a cent of this $8 million on us," he said.

The next fundraising endeavour for Love Your Sister is the charity's partnership with the upcoming Sydney Harbour Run on July 29. Johnson said he plans to "drench Sydney harbour with a 'human rainbow'" by encouraging participants to dress in a rainbow of colours, including a pair of rainbow 'Connie Cottonsocks' on sale via the organisation's website.

"It's a two-sided dream," he explained to 9Honey. "It's a chance for us to get together and use my favourite weapon against cancer which is joy and love. It's also a chance for us to just start our subtle way of calling for an end to 'cancer racism'".

'Cancer racism' is a phrase he uses to explain the amount of attention some cancers attract, while others struggle for mentions and ultimately funding.

"We've adopted the rainbow theme to say all cancers matter and that they must all be vanquished and maybe we should consider swearing away our allegiance to our particular colours."

One in two cancer deaths comes from a rare cancer now, according to Johnson. "So there's an uneven distribution with funding. There's an imbalance that's occurred, and the pendulum needs to swing back. We ditched the pink two years ago and we're all rainbows now."

Not only does the charity's adoption of a rainbow of colours vividly demonstrate their focus on cancer in all it forms, but Johnson says it's also because the theme inspires joy.

"It's the joy thing too because I can't raise money for cancer and be depressed about it. It [cancer] can take everything but it's not going to take my f-cking joy," Johnson said.

"And it's kind of all you get left with. It's a choice you have to make. I've never wanted to be serious about vanquishing cancer, I mean I started this thing on a f-cking unicycle for Christ's sake. I've been taking the p-ss for six years. At the end of the day, I've just come to the firm conclusion that I must combat this pain with joy and love."

So far Love Your Sister has raised just shy of $8 million. It's an extraordinary amount of money for a charity that has only been running for six years, started by a brother who loved his sister who was dying of cancer.

Shortly before his beloved 'Connie Cottonsock' passed away, Johnson had walked away from his acting career so he could make the charity his sole focus. And he doesn't stop at raising money. Love Your Sister is also careful about how that money is distributed, ensuring every dollar donated goes directly to where it is needed the most.

"I fund it separately," he said of how he runs the organisation. "We've got 1500 volunteers but you can't get everything sponsored. So we rely on individual sponsors, corporate donors, philanthropic organisations to survive.

"And because of our collective giving power we're able to negotiate research-only guarantees from the institute [Garvan Institute]...which individuals cannot get if they donate to the institute themselves. There's no doubt we represent the best bang for buck when it comes to killing cancer quickly."

While Johnson admits he's always happy to "take the p-ss" as often as possible, he also describes himself as "militant" when it comes to his mission to rid the world of the scourge of cancer.

"I think that we're going to get better and better at treating it," he told 9Honey. "I think we need to stop thinking there's a silver bullet to cure the myriad of diseases we call cancer and perhaps stop thinking of curing and start thinking of treating because it's been 50 years away for a long time and it's something the west has fought actively for 2000 years. How close are we? You're best to ask the scientists.

"But I do believe this can be the last generation that loses kids and mums to cancer. I have to believe that."

"The best cure we have is early detection."

While he says cancer treatments have greatly improved, Johnson explains a cure will take time.

"Just because we can fix most things instantly, doesn't mean we can solve these centuries-old conundrums with a million dollars. Cancer treats our millions with scorn and contempt. We've thrown all of our collective will at it, and we are winning. But we need to be patient and trust our scientists."